This is a topic close to home.
My wife was diagnosed with stage 3C cancer of the ovary a bit over a year ago. She was a chemotherapy superstar, had few complications, and has been in remission since her treatment finished last October. Still we know her chances of a cure are fairly low.
Understanding statistics is a mixed blessing. Even though her chances of this cancer never recurring are pretty low, her chances of living quite some time with cancer if it recurs, while maintaining a reasonably good quality of life are high.
We tend to think of cancer as a disease that you may get, have treatment for, and either be cured of the disease or die from the disease. In a way that’s correct, but what’s easy to forget is that there are lots of people who get cancer, are treated, don’t get a cure, but for whom treatments are fairly effective at holding the cancer in some degree of control and they live for long periods of time with cancer. Living with cancer is different than living after cancer. This is more common now than ever before, as new medications are developed that can treat cancer and often give short or moderate duration remissions, or simply prevent progression of the cancer.
Several types of cancer are particularly common and also have treatments that while not curative can be effective enough to allow a person to live with their cancer for a long time. Among others these include breast cancer, ovarian cancer and prostate cancer. Living with cancer, as differentiated from living after having had cancer, requires rethinking how you approach life. We tend to think of our lives as having a youth, an early adulthood, the mid-life years, the older active adult years, and old age. Couples who have good relationships often plan to get old together, and think of a future in terms of decades, rather than in terms of years. All of the online retirement planners ask you what you want to use as a life expectancy. I’ve always entered something like 85 years, the actuarially correct answer for a healthy 55 year old.
When a person has a disease that they know they will die from in a few months it requires rethinking how to spend your last days. This is a type of thinking that although painful and difficult, is a way that we intuitively understand. What’s really important to me. I cannot put off for tomorrow what needs to be done today. Short term planning and thinking is something that is conceptually concrete. Most of us can wrap our brains around this scenario.
When a person has a cancer they have been told cannot be cured, but that they have a good chance of living with for some ill-defined number of years, maybe 2-3, possibly 5-10 or even more, this requires a different type of thinking. Oh, and by the way add that maybe you’ll be getting some sorts of treatments that will make you sick, or have low blood counts and require you to avoid being around lots of people, but we don’t know when or whether you’ll need these treatments. Living with both the relative certainty that you have a cancer that is not curable and also many uncertainties (how long you have, how will you tolerate the treatments, how good will your quality of life be, how will your family and loved ones cope) is different and has its own challenges. Finding the right balance:
- living in the present vs. planning for the future
- addressing your feelings and needs to grieve while enjoying every day
- needing support and help but wanting to be treated normally
- laughing and crying
- enjoying the everyday pleasures versus doing the things you’ve always wanted to do but never made time for
Lots more I’m sure I haven’t thought of yet.
I don’t profess to be an expert on how to live this life. under these circumstances. I expect I’ll learn more about it over the next few years. I pray that I’ll be up to whatever decisions come my way.
Edward Pullen is a family physician who blogs at DrPullen.com.
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